Transfusion Fun 101

Before I ever had a transfusion, I thought of them as scary, critical and dangerous. I never EVER thought I would need one. At this point, I’ve had 14 of them, and I now equate a transfusion to a chill sesh – relaxing in a lounge chair, reading, watching TV or a movie, and visiting with my nurse friends. I get pillows and warm blankets and Hoag’s fantastic army of volunteers come around with endless treats. Nothing scary about transfusions 🙂

I’ll say it again. NSHLAMOAANFP (Neupogen Shots Hurt Like A Mo Fo And Are Not For Pussies) They are killing me – I’m not sure why they are so f-ing painful, but getting them everyday is really wearing on me. The bone pain from these shots is settling in on my lower back. I’m wondering if all these injection site bruises on my triceps will have subsided a few years from now, when I am living in the retirement home. I’d hate to have black and blue flesh flopping around when I raise my arm, yelling “Bingo!”

My most recent blood counts are down on all 3 fronts. My platelets are moving down in their typical fashion, between 10 and 20 points a day. My latest count was 9 – an all-time low (normal range is 150-440). I’ve been averaging platelet transfusions every 4 days at my HAFH (Hoag Away From Home), with my most recent last Wednesday afternoon. My red cells are low as well, so I had a one unit transfusion on Wednesday afternoon and another on Thursday morning. The low hemoglobin makes me exhausted, weak, short of breath and a little shaky. My white markers are all setting records for the lowest they’ve been since I began this brawl. One of the markers that goes into the white cell count is the MID, and mine measures 0.0, just like Blutarsky’s GPA at Faber College!

The various medications I have tried do not seem to have a positive impact on my blood counts, and my team of docs don’t know what else they can do to keep me alive, so they have decided to send me to the City of Hope in Duarte, CA to meet with their gurus in the field of hematology. They suspect the problem is in my bone marrow, so I will probably have a second bone marrow biopsy soon to see WTF is going on in there. The City of Hope is known for their expertise in this area. I have an appointment there today, thanks to Todd’s tireless efforts to get me in. A few good friends (Tony, Jon and Harold) are well connected there, and they have arranged to get me in front of the top specialists. My case will be presented to a panel of experts next Wednesday.

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

24 thoughts on “Transfusion Fun 101”

Oh dear dear Joselyn! We are all praying (in every religion and non- religion out there) that City of Hope has the answer! You are staying so strong and that has to help in your fight! Thank you for keeping all of us informed through your blog. You are in every one of our conversations and discussions. We all wish there was something we can do to help!!! We love you and are routing for you!

Hey Joselyn, I was just getting ready to go out and scout BC vs N. Iowa for our match tonight but couldn’t resist reading your latest accounting and I have to tell you, YOU CRACK ME UP! You are the best and the best fighter I know. Do you have any eligibility left because you can play for us any day? Hang tough and we are all rooting for you and thinking of you daily. MICK and the USC Women’s VB Team.

Thanks, Mick, for your kind words! I’m honored that you would consider me for the team 🙂 To be honest, my once mad hops are not quite so mad these days, due to the fact that my left quad has some issues: ILLFRMT (It Looks Like Frankenstein Ravaged My Thigh) and HAFATS (Hematomas Are Fugly And They Suck)! Maybe I could come in and serve my gnarly, wicked floater.

Dear Joselyn, you always look like a teenager of course without the acne….I so admire your awesome spirit. I think about you daily and wishing you the very best at City of Hope. Keep the laughter coming , it’s life’s sweetest creation.
xo
Patty,

As my Quaker friends say, Holding you in the light, Joselyn. Hoping for some good news soon. Your courage and indefatigable sense of humor astound me. Now you\’re my hero in so many new ways. You go, girl!
xoxo
Marjorie

I hope things went well at City of Hope today. I can’t tell you how much I hate that you have to go through all of this. Gerry’s old attending back in his medical school days is the Medical Director at City of Hope – Alexandra “Sandy” Levine. We still exchange holiday cards at Christmastime. If you need me to get in touch with her, I will. Also, I’m well connected at Dana Farber in Boston if you need to go there for a second opinion.

Joselyn,
I drove up to see a friend in Pasadena today (honest to goodness we met at Panera on Foothill Blvd.) and I passed City of Hope On the way and thought of you! Of course “Foothill” blvd was another reminder then I read this. Strange cosmic forces at play. I’m really so incredibly sorry you are going through this, your strength and humor are an inspiration to all. Please let me know if you need anything –Jeef has my number (even if it’s a macho meat burrito from Naugles at 3 am (oh wait that was 30 years ago)– so ok Del Taco? And know I’m thinking of you always ❤ fight on!!!!!! ❤ Tracy (it's MILLER time!!!!)

Just know I am thinking about you CONSTANTLY!!! You must write a book when this is all history. Should you want a private nurse I could send you my resume. I’ll work cheap…aw heck, free for my little BooBoo. Love you! Yogi

Everytime I read your posts I crack up … and then I tear up … and I want to write something fabulous … and then I chicken out. But we love you and think of you constantly. Kevin was reading your post over my shoulder and loved your Blutarsky reference. 😉

Joselyn…I am really SOOOOOOOOO happy you are going to the City of Hope…the doctors there are KA (Kick *&%^) fantastic and your platelets, red cells, and white cells have no chance to continue to FU (f*&^% up)…..you see….we are all making a lot of noise for you so Someone up there better listen….tomorrow will be a good day for you…that’s my mantra for tonight… kisses and hugs Silvia

Joselyn, We are thinking of you and sending positive thoughts your way!!! Xoxo to you! You have a fabulous sense of humor and we are proud of you…you have been a trooper and deserve a nice trip any place you like when you feel better!!!

Joselyn, I was always aware of your beauty, but never suspected it ran so deep (should have known). Your fight reminds me of many champions I have coached and their mantra: “Attitude is everything.” I am proud to know you, your family and your friends that have shown you such love and support, but most of all, your fight will be another story I will tell my younger charges who will find it inspiring I’m sure.

Damn girl, you are tough enough to make Team Canada! Team USA is a given!

Much Love,
Hugh
P.S. You haven’t lost any of the physical beauty either!

Joselyn- I’m embarrassed to say we only recently heard of your situation and are new to your blog. WTF is right. Can’t believe what I am reading. We are so very sorry you are going through this. But – if humor is helpful in recovering, then you should be on the mend soon. Your blog is simply brilliant. There is a book deal to be had, or appearance on the Today show – or a medical degree waiting for you. We are sending you endless good vibes and thoughts of health. Stay strong and kick a**!!!!! Love, Stacy and Nathanael Singer